"I tell him I tried. I tried to keep memory alive; I tried to fight those who would forget. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. There is so much injustice & suffering crying out for our attention. We must take sides. We must interfere. -E.W.

Weekly Update: March 31, 2012

RT-300 FES Therapy. It’s here! Restorative Therapies delivered, set-up, and fitted it yesterday. Ryan did his first full session and adapted to it so quickly that it almost seemed like it is designed and built with him in mind. It’s beyond wonderful! So much so that I will put out a post dedicated to it next week. I’ll definitely include video of Ryan using it too. The targeted fundraiser to offset its cost has raised $4,500 ($3,165 from my fundraiser, and the rest from Briar Wood and Broad Run Lacrosse and a few other private donations). I will leave this fundraiser open for a bit longer in hopes of more donations. Our deepest thanks to all who have (and might) help us with this. It’s just what Ryan needs to build muscle, improve bone density, and give a cardiovascular workout. The motion and stimulation should help him relearn movement patterning too… if he has the capacity.

Baclofen. The last scheduled reduction was missed because the doctor didn’t get the order in. It was rescheduled to Thursday, April 5 but the nurse will be in the area on Tuesday, April 3 (Sue’s Birthday!). We are taking the dosage down to 45 mcg (from roughly 60 mcg).

Bed. Ryan’s bed was doing some odd things yesterday morning. I was on the phone with customer support for almost four hours straight trying to resolve it. Talk about being overwhelmed! I had to tend to Ryan (first priority) while carefully following technical support’s instructions for taking apart and diagnosing the cause At this very moment, the mechanical and electrical components are disassembled. We were getting close too, before we blew a fuse on the bed’s CPU. Everything came to a screeching halt and now I must wait for this tiny ceramic fuss to be delivered. UPDATE: The fuses arrived and I snapped them in. The bed is functional enough, but barely, to get us through the weekend. Then I can resume with technical support.

Therapy Percussion Vest. This also arrived today. It provides another way to do chest percussion therapy to keep Ryan’s lungs clear by mobilizing secretions. This is a mobile unit, so it can be used anywhere there is a power supply. Ryan already gets this therapy at least four times a day. Twice while in bed overnight (the bed has this function) where he is basically lightly tossed around. Then twice during the day, where I cup my hands and “thump” his back between the shoulder blades and along his sides for twenty minutes. This new equipment will replace me! It’s more effective as well. I hope this helps my fingers and wrists heal a little.

Urinary Tract Infection. Ryan will complete his heavy-duty course of antibiotic this week to treat the UTI. The good news is he is not showing any sign of infection, both clinically and by our home urine dips. When this is finished he will return to a low-dose antibiotic. One week following we need to send out his urine for another culture to make sure the bacteria doesn’t return. It’s a nasty one and the need to eradicate it is paramount.

Comments

I don’t know how you find time… …but so thankful you keep us updated to what is happening. I am familiar with the Therapy Percussion Vest and know it does a much better job than “thumping.” This will give you more time for other technical jobs — the bed, for instance. You are such a “techie,” thank goodness. I don’t know how you keep up with it all though!
Hoping all goes well with the Baclofen reduction, UTI recovery, and wishing bone density improves with the new piece of equipment. Looking forward to the next video.
SHSP NGA Love

Ken, That certainly was a busy day and like Jo said ,don’t know how you keep up. Can’t wait to see Ryan on new machine,sounds like it will really help him,also the vest,that’s great and hope your hands and wrists get a little rest
So glad baclofen reduction is set for Tues ( Happy Birthday ,Sue) and that UTI has improved and hoping it won’t come back:( Stay strong Ken and Sue,better days and better things are ahead!
Always here and always praying for all Love Gail

Ken, I know you mentioned Ryan was taking probiotics. Do you know if they’re specifically geared towards the urinary tract (i.e. contain high amount of Lactobacilli) or is it an overall body one? There seems to be a lot of information out there about the actual good/bad product delivery, such as how some probitics (especially in pill form) are not that beneficial due to how they’re manufactured, pressed into pill form which causes a loss of the potentcy value of them. I’m just wondering,given Ryan’s many bouts with UTIs, would it be beneficial to have a probiotic more geared to that specific area to see if it helps cut down on the UTIs? Another thought…is it possible that the bad bacteria causing the UTIs have just adapted to the present probiotic and aren’t affected by it anymore?

Hi Ken, you weren’t kidding when you said you’ve been busy!! I really don’t know how you’re able to focus in on tech support while monitoring Ryan — it seems you have become the consummate multi tasker! I am so happy to hear that the new therapy equipment is everything you had hoped it would be. I would love to see a video of Ryan using it (when you have time to make one, whenever that might be!).

I am praying for more donations to offset the cost of the equipment. It’s so incredibly expensive, but I know it’s worth every penny. I think your idea to leave up the fundraiser for a while longer is a good one — maybe another month or so, to give people more time to contribute.

Wishing you and your family a good weekend together, Ken!
Love, hugs, always praying, and grateful for all the progress Ryan has made!!
Paula

Keeping all of you in my prayers. Would love to own a “We Got This” t-shirt, to get the word out, but none available in size small. Hopefully they will be soon. The RT-300 FES sounds like a dream come true. FANTASTIC!